The team checks in with Dejanique, Alex gets some answers for his mysterious pain and we meet a young bride searching for solutions to steroid-induced medical issues
On the September 19, 2019 episode of Chasing the Cure we met two new cases and received an update on Dejanique. Plus we sent out a call for help for next week’s episode, which will spotlight a woman in Texas dealing with mysterious wart-like growths.
Are you ready to recap last night’s episode? Whether you were able to view it live or need a refresher, let’s have a look at how the Chasing the Cure team continues its tireless pursuit of medical answers for those who most need them.
Case file: Alex
Four years ago, Alex was a 16-year-old high school sophomore in West Hempstead, NY. He led a life that was active and outgoing. He'd even started a strength training routine to make physical fitness and a more significant part of his life.
Then, a simple tear to his tricep muscle seemed to set off four years of all-over body pain. What started as a fever and body aches has evolved into chronic pain that keeps him in bed all day some days. He's dropped out of college. 17 specialists in a variety of fields can't seem to sort out what's causing Alex's constant pain. He's afraid if he doesn't get an answer soon, he never will.
The Chasing the Cure physician team was quick to assess Alex’s symptoms. Their primary concern was that his tricep tear could have been the inciting incident for a complex condition called Amplified Musculoskeletal Pain Syndrome (AMPS). In this condition, the nervous system experiences a short circuit and the brain experiences even the smallest stimulus as an amplified level of pain. Injury, illness, and stress are often causes, and the team really had an eye on that tricep tear. The team referred Alex to a series of seven specialists in New York who ruled out a variety of conditions.
Ultimately, Alex would arrive at Children’s Hospital of Philadelphia to see Dr. David Sherry, a rheumatologist and one of the country’s leading experts on AMPS in children.
The good news? Alex has been officially diagnosed with AMPS and can start working towards a treatment plan. The next steps are to wean Alex off the more than 22 pills he was taking each day. He's now down to three or four pills a day and ready to start a progressive course of physical therapy. This physical therapy will help retain Alex's brain and nervous system to re-interpret normal motion as normal and lessen his symptoms over time. He'll also start cognitive-behavioral therapy (CBT) to learn coping mechanisms to manage the pain should he have a flare-up.
The best part of Alex’s diagnosis? Dr. Sherry stated that only 30 percent of patients with AMPS who undergo therapy have a recurrence of symptoms after five years. That means Alex is most likely on his way back to college, his active lifestyle and a body that’s ready to get out of bed more days than not.
Case status: Diagnosis received – treatment commencing
ALEX'S CASE WAS FIRST FEATURED ON EPISODE SEVEN OF CHASING THE CURE
Case file update: Dejanique
Back in Episode 4, we met Dejanique. At 22, she’s suffered from debilitating abdominal pain for years. The Chasing the Cure team of specialists was able to narrow down the cause of her distress: uncontrolled Type 1 diabetes. She was put on a constant glucose monitor that allowed her to check her blood sugar levels real-time on her phone. And now, Dejanique feels vastly improved.
On top of the glucose monitor helping Deja get her diabetes in check, she also saw a dermatologist who was able to diagnose the recurring rashes on her abdomen that occurred each time she had a pain flare-up.
It turns out that the heating pad Deja was using to ease the pain was causing the rashes – a condition called Erythema Ab Igne, also known as “hot water bottle rash.”
Now, Deja’s proud to report she hasn’t been to the emergency room in over three weeks (remember – she’d been to the ER 20 times in the past three months when we met her) and her happiness is a “20 on a scale of one to ten.” Now that’s progress.
Case status: Treatment in progress
DEJANIQUE'S STORY WAS FIRST FEATURED IN EPISODE FOUR OF CHASING THE CURE
Case file: Tessra
Four years ago, Tessra woke up in Washougal, WA with lesions in her mouth. Her face was swollen, seemingly for no reason, and she immediately went to the emergency room.
Four years later, Tessra’s been on constant steroid treatment which has eliminated her mouth lesions but added something unwelcomed: over 100 pounds of weight gain and nonstop swelling. Now, she’s in constant pain. She gets water blisters all over her body, struggled through opioid addiction and developed steroid-induced Type 2 diabetes. All she wants is her body and life back before these mouth lesions and unexplained body swelling came in her life uninvited. She also wants a chance to enjoy her life with her new husband – something she hasn’t had much chance to do since they got married two years ago.
The Chasing the Cure physician team knew Tessra has exhausted all of her medical options in Washington. They wanted to get her to a specialist as soon as possible to help work toward getting her off the steroids that seem to be doing more harm than good.
Tessra met with Dr. Sanjeev Jain, an allergist and immunologist. Dr. Jain was able to rule out any vital organ damage and has set a course of action to further Tessa's search for a cure. She'll be referred to an ENT specialist and a dermatologist for biopsies to better understand the lesions in her mouth and body swelling. But first, they need to taper her off the steroids so the biopsy results will be as accurate as possible.
We’ll be following Tessra’s case in future episodes and have fingers crossed for a smooth journey towards her upcoming biopsies.
Case status: In progress – stay tuned for updates
TESSRA'S STORY WAS FIRST FEATURED ON EPISODE SEVEN OF CHASING THE CURE
Strange Affliction: Michael
Pranks gone wrong are the reason for many-a-trip to the emergency room. Michael, an 18-year-old from Memphis, TN had no idea that a simple trip to the beach and a prank by some friends would leave him with a startlingly rare medical condition.
When his friends buried him in the sand, he contracted hookworms (note: that link contains graphic images that might not be suitable for all readers). This microscopic parasite burrows into the skin and feeds off the flesh. They can even get into the bloodstream and cause death if left untreated. They're extremely rare in the U.S. and Michael was lucky his case was caught early. Fewer than six people out of every 100,000 contract hookworms. Rare, indeed.
He underwent cryosurgery on his feet to kill the worms – literally freezing them out of his body. Now, Michael has vowed to never walk on the beach barefoot again.
Next, as we look forward to the following week’s episode, the Chasing the Cure team needs help with LaKeitha’s case:
LAKEITHA'S STORY WILL BE FEATURED ON NEXT WEEK'S EPISODE OF CHASING THE CURE
If you have ideas for what could be causing LaKeitha’s skin growths and discolorations, share your thoughts with us on the Chasing The Cure Facebook page or on Twitter. You can also visit the Chasing The Cure online community and comment on LaKeitha’s case directly.
E. Napoletano is an award-winning journalist and the recipient of the 2019 Illinois Women’s Press Association first-place prize for her feature on the traumatic effects of family separation policies at the border.